Locked in to euthanasia

There can be no more difficult case for dispassionate discussion than the fate of Tony Nicklinson, a totally paralysed British man who wants to end his life. Last week the UK High Court denied his request for euthanasia.

After a catastrophic stroke in 2005, Mr Nicklinson is paralysed below the neck and unable to speak. He can move only his head and eyes. He communicates by blinking. Swallowing is laborious. He often coughs and needs to have saliva wiped from his face. Once a sports-event manager and rugby player based in Dubai, nowadays he writes his memoirs and watches a lot of television.

He describes his life in the bleakest terms imaginable: “dull, miserable, demeaning, undignified and intolerable. …it is misery created by the accumulation of lots of things which are minor in themselves but, taken together, ruin what’s left of my life.” Since 2007 his mind has been set on euthanasia.

Each of the three justices on the High Court took pains to express their sympathy for his plight (and the similar case of a man named Martin). But they reluctantly agreed that that the existing law on murder had to be affirmed. In England, euthanasia is still a crime. Even passionate supporters of legalised assisted suicide supported the Court's decision. The head of Dying with Dignity in the UK, Sarah Wootton, commented: "his case goes way beyond what Dignity in Dying is calling for. We campaign for dying people to have the choice of an assisted death if they're mentally competent and there are legal, upfront safeguards, and of course Tony is disabled, he's not dying".

But is death really the only solution to the dependence and limited possibilities of Mr Nicklinson’s existence? Perhaps it takes an extraordinary person, but even with locked-in syndrome, most people want to live. If the media didn’t suffer from congenital short-term memory loss, journalists would remember a French colleague who was even more locked-in than Tony Nicklinson. Jean-Dominique Bauby was the editor of the French edition of Elle when he suffered a massive stroke. He retained his capacity to think and blink (only with his left eye, though).

Crippled as he was, he wrote an international best-seller, The Diving Bell and the Butterfly. It was a poetic reflection on his dependency which was drenched with mordant humour and utterly devoid of self-pity. Here is he is describing his meals:

“By means of a tube threaded into my stomach, two or three bags of a brownish fluid provide my daily caloric needs. For pleasure I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations. Once I was a master or recycling leftovers. Now I cultivate the art of simmering memories. You can sit down to a meal at any hour, with no fuss or ceremony. If it’s a restaurant, no need to call ahead. If I do the cooking, it’s always a success.”

The author of the study, Steven Laureys of the Coma Science Group at the University Hospital of Liege in Belgium, admitted that his sample size was small – only 65 patients in France. But it confirmed other research into how people adapt to calamities. It also suggested ways to care for these patients. For instance, nearly all of them felt that they were not engaged in worthwhile activities. Many of them wanted more social interaction.

Dr Laureys believes that the situation of locked-in syndrome patients will improve substantially as more sophisticated technology becomes available. "I predict that in coming years, our view of this disease is really going to change," he said. "It makes a huge difference to be able to read a book or go onto the internet at will."

In the light of stories like these, perhaps we should recalibrate our notions of “worthwhile” and “dignified”. In fact, commented a Canadian neuroscientist unconnected to the Belgian study, "We cannot and should not presume to know what it must be like to be in one of these conditions. Many patients can find happiness in ways that we simply cannot imagine.”

Not that patients delight in their disability. A year may pass before they reach a steady level of subjective well-being, said Dr Laureys. Hence requests for euthanasia soon after a stroke or accident are not well-informed: “Recently affected [locked-in syndrome] patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life.”

A couple of years ago, a woman who has lived with locked-in syndrome for more than 30 years, Maryannick Pavageau, was awarded the Légion d'honneur, France’s highest civil honour, precisely for leading the charge against euthanasia. (See last year's article in MercatorNet here.) Mme Pavageau flatly denied that her life was miserable:

"All life is worth living. It can be beautiful, regardless of the state we are in. And change is always possible. That is the message of hope that I wish to convey. I am firmly against euthanasia because it is not physical suffering that guides the desire to die but a moment of discouragement, feeling like a burden... All those who ask to die are mostly looking for love."

Might that be the case with Tony Nicklinson? Perhaps the money used to promote his case and to pay for his legal fees should have been spent on a trip to Brittany to seek counselling from Mme Pavageau.

Besides, there is a significant detail in his application for voluntary euthanasia. He doesn’t want to die; he only want to be able to die. The judgement pointed out that:

“At the moment he thinks that he would probably wish to end [his life] in a year or two, but he wants to establish the right to die with dignity at a time of his choosing.”

Even though his life is “dull, miserable, demeaning, undignified and intolerable” he still wants to hang on to it. This suggests that he could respond if he were given more affection and stimulation.

None of us – least of all me – would want to be in Tony Nicklinson’s predicament. I fear that I would react more like him than Mme Pavageau. But it would be a heartless society which prefers to respect his “autonomy” by giving him a lethal injection rather than giving him and his family more support, affection and friendship.

In the end, making our own happiness is the supreme choice we have to make in life. As a New Zealand rugby player with locked-in syndrome wrote in the BMJ a few years ago: "It is definitely a crazy, mixed-up world. I'm just glad to still be alive -- most of the time anyway… Shit definitely happens; I just have to make the most of each day in my journey towards recovery."

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